To my Game of Temporal Lobe Fam

Epilepsy is much like the weather. It’s unpredictable and always changing. A sunny, 85 degree morning can quickly turn into a 58 degree with scattered thunderstorms afternoon.

With epilepsy, you can never predict what will happen next. You prepare for a picnic. Lightning strikes, and you have to watch the latest documentary on Netflix.

The weather is very unfavorable when we really don’t need it to. But through sunshine and rain, each of you have been right beside me.

Whether you were there at the beginning or met me along the way, I want to thank you for supporting me.

Thanks for putting up with my nonsense. Thanks for listening to my randomness and laughing, even when my jokes weren’t funny.

You gals and guys are the best! It’s because of you that my Walk to END Epilepsy this past weekend was such a success.

From the bottom of my purple heart, thank you, my ever-growing epilepsy fam!

 

 

Let’s Walk to END EPILEPSY!

I’m participating in the Walk to END EPILEPSY, and I want to invite you to support me in helping raise funds for the Epilepsy Foundation of Texas.

As a person living with epilepsy, this is a cause that is close to my heart.

Epilepsy is the third most common neurological condition, and it affects more than three million people in the US alone.

There is a lot of stigma surrounding this disorder. By increasing awareness, we can spread important and accurate information about epilepsy. We can educate others about seizure first aid and end the stigma surrounding epilepsy.

The Epilepsy Foundation provides many needed services to the over 15,000 people living with epilepsy and seizure disorders in north and east Texas.

Join me in helping raise funds for an important organization that creates life changing opportunities for people living with seizure disorders.

Please consider making a donation on my fundraising page at the link below. No donation is too big or small.

Walk to END EPILEPSY

If you are around the area and would like to take a walk with me,  join my team Game of Temporal Lobe.

The Epilepsy Foundation Texas – Houston/Dallas/Fort Worth is a recognized 501c3 non-profit organization and all donations are completely tax deductible.

Thanks!
Vero

Two years…

It’s been two years since I last saw my neurosurgeon. Two VERY long years.

After my last visit, my doctor had me make my follow-up and MRI appointments in two years because everything was going according to plan. I was off my AEDs and had been seizure free for three years. He just wanted to make sure the dark spot in my MRI scan wasn’t anything to worry about.

Since the last time I saw him, I went from being three years seizure free to having frequent convulsive seizures. Epilepsy had woken up just like the white walkers did in Game of Thrones. The monster had decided it was time to rule again.

The ruling part never happened. I wasn’t going to give up without a fight. I got back on my meds, started figuring out my new seizure triggers and changed my routine to try to avoid them.

The first of the two years was the worst. I spent a lot of time at the neurology clinic. I got scrapes and bruises from my falls. I was exhausted and met more paramedics than I ever wanted to. I scared a lot folks and had to explain to them that I wasn’t crazy, although my husband and friends will tell you otherwise. 😉

Those two years came and went, and it was time for my MRI and to see my neurosurgeon again. For me, the worst part of getting seizures again isn’t just dealing with the entire ordeal. It’s having to tell those who’ve supported me along the way that the fight they thought was over isn’t. The sadness in their eyes hurts the most because I don’t want to see those amazing, wonderful people blue.

To them I say, I’m doing alright! My recent MRI shows no abnormalities. I’m close to re-reaching my one year milestone. Yes, the fight isn’t over, but I’m going to be fine. I still have a lot to do. I need to show the world that even people with holes in their head can do anything they set their mind to.

 

Monday Reflections: One in twenty-six

Twenty-six people living ordinary lives.
Some learning to walk for the very first time.
Others with wrinkles around their eyes.
All filled with dreams waiting to be realized.

Then, one of those twenty-six is caught off guard.
Their greens turned red. Their ups turned upside down.
Their life taken away by a silent, electrical terrorist.

One in twenty-six people will hear three life changing words.

You have epilepsy.

I’m the one in 26.

I will always be tired.
I will always have a foggy memory.
I will always be a tiny bit moody.
I will always wonder why.

But I will never give up.
I will fight for the next one in twenty-six.
I will be there to offer a helping hand.

 

Living with epilepsy isn’t easy, but it hasn’t been all bad. I’ve learned how strong I can truly be, and how I can make a difference. This past month, I was able to offer some advice to a girl who had just been diagnosed. Being able to help her make sense of everything and guide her through this difficult time has made every painful moment worthwhile. If I had decided not to get back up all those times I thought I couldn’t, I wouldn’t be able to offer her solace today. Sticking it out is difficult, but never impossible. Today I reflect on that. 

November is National Epilepsy Awareness Month: Ready to spread awareness?

purple ribbon

We’re a third of the way into the month so this post comes a little late, but late is better than never. November is National Epilepsy Awareness month, and this is our chance to share our story and educate others about seizures.

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In the winter of 2009, I awoke to confusion as paremedics held an oxygen mask to my mouth. My vision was blurred, and I could barely make out the faces of the people standing around me. Unable to see clearly and hearing unfamiliar voices, I panicked. I attempted to push and pull away, but my body would not obey. If I had the strength, I would have given those paramedics a good fight, but the seizure had left me completely fatigued. Instead, I demanded explanations and screamed why. And that is how my epilepsy journey began.

Almost a decade later, I’ve faced epilepsy in several forms. I faced weekly complex partial seizures that took the energy out of me and made me lose sense of time. I had brain surgery to try and remove the seizure focus. For three years, I was seizure free and regained the independence I’d lost. In 2016, the convulsive seizures began. After several attempts, I got my seizures under control. Today, I’ve finally gone eight months seizure free once again! This journey has been a long one, and it’s far from over, but I’m okay. I’ve survived and become so much stronger along the way. And this is thanks to all those people living with epilepsy who have shared their story with me. My hat goes off to them!

Epilepsy is the fourth most common neurological disorder. If a person has two or more unprovoked seizures that have occurred without having a known or reversible medical condition, they are diagnosed with epilepsy.

Epilepsy is a spectrum of seizure disorders that varies from person-to-person. Brain injuries and other medical conditions can be a cause for epilepsy, but most people never learn the underlying cause for their seizures.

Even if you don’t have or know anyone who has seizures, it’s important to get educated. Will you help me educate others?

It’s National Epilepsy Awareness Month. Let’s LEARN! 

 

 

Epilepsy and Me

My body rattles. My body shakes.
The tongue is bitten. The tooth breaks.

Unconscious monster has awoken.
And I am here left broken.

Were the last three years lost?
Was surgery worth the cost?

While there is hurt in my soul,
I have not lost my goal.

There is beauty in tears,
And no reason for fears.

I have my purple support system
to guide me with their wisdom.

With them, the impossible is possible.
With them, I’m unstoppable.

My epilepsy battle might not be over, but neither are my spirits. This girl is going to kick Epilepsy’s butt again!

Happy Three Year Brainaversary!

seizure-free-poster

It’s hard to believe that 1,095 days of seizure freedom have passed! The time where a couple of weeks without a seizure felt like a victory is now a distant memory.

I am so happy and thankful for my family and friends who’ve helped me along the way. I can never repay them for all the love and support they have given me, but I hope this small brainaversary entry will show them how grateful I truly am.

Children have monsters living under their bed.
My hidden monster lived inside my head.
Covering myself in blankets would not help a single thing.

Although the doctors tried to put the puzzle together,
I always felt like a broken porcelain doll forever.
Hiding and crying, you were there to put me back together again.

Thank you my purple support system for giving me a listen.
Thank you for your pep talks and words of wisdom.
Thank you for all the times you made me see reason.

I know I wasn’t the most patient of girls,
especially when that monster gave me a swirl.

Even with all my fits and tantrums,
you helped me fight my phantoms.

Thank you my purple system for all that you continue to do.
It is because of you that I am whole and new!

To everyone out there with a hole inside their head, I want to wish you a Happy Brainaversary!

I could have had it worse…

MRI Scan

I remember the kicking and the screaming I did so long ago.

Why me? What did I do wrong? It’s not fair! I was a repeating record.

Now, I sit here almost three years later, massaging the small dip in my skull.

I know now that I could have had it much, much worse.

An occasional strong, spiking headache is what’s left of my seizure disorder.

The empty bottles I won’t have to refill anymore lay abandoned in my night stand.

Almost a decade ago, the kiddy tantrums felt necessary, and I did get more that just bumps and bruises from those futile scenes. I learned something, too.

Instead of being angry at the entire world, I learned that my energy was put to better use in fighting my battle against epilepsy. After all, it wasn’t anyone’s fault, and throwing a fit wouldn’t solve anything.

Looking back, I know I could have had it so much worse.

I could have had over 100 seizures a day. I could have been unable to finish college and find a job.

I could have gone through those painful months of recovery just to find out surgery didn’t work.

I could have, but I didn’t. I survived.

So I sit here hoping that this electrifying storm passes by soon, but if it doesn’t that’s okay.

It’s okay because my epilepsy battle is coming to an end, and I’m going to come out so much stronger.